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lmp1
@lmp1

Posts: 29
Joined: Jun 27, 2017

2 different diagnosis

Posted by @lmp1, Oct 28, 2017

Has anyone ever had 2 different opinions on type of brain tumor??
We just got report from Mayo and it has my daughters tumor as a glioblastoma grade IV. The hospital who performed her surgery says it is a PXA grade 3. When asking her local oncologist why are they different? after sending it to him as soon as we got the report his response was “I didn’t get it” so we offered to show it to him and his words were “ I’m not interested in seeing it” and “it’s just a difference in opinion.”
All our trust in this doctor is gone. How can he say that? Why would he not look at the pathology report? It’s her life we are talking about! So now we find a new oncologist? Am I over reacting? Opinions please!!

REPLY

@lmp1 Hi, lmp. Now, I don’t know much about brain tumors except that I have a steadily growing supply of dead amyloid in my cerebellar cortex. But I do also know a bit about diagnosis. And ego. There is a huge ego trip going on between the massive majority of doctors on earth and those in the presumed superior clinics, such as Mayo, Sloan Kettering, Stanford, etc. And especially after a local oncologist not on has diagnosed, and then done brain surgery on the basis of that diagnosis without checking for a second and then a third diagnosis. Once that I found I had multiple very serious problems, I began to ask doctors “Why? What is it?” If you read my story at https://bit.Ly/1w7j4j8 you will see that I checked with some 60 doctors plus a couple hundred PAs, nurses, technicians, etc. Each train rode a different rail. Finally I found a couple docs who put me on the right track. Now most agree with my diagnosis, and I know what to expect from this fatal crap. Anyway, go for a third, and fourth opinion if you feel you need to. After all, it is your daughter’s life at stake, so dump any doc who says it is “just a matter of opinion”, or refuses to recognize the opinions of other doctors.

Hi @lmp1. How confusing when the professionals disagree and the diagnosis isn’t clear. Like OldKarl, said: getting a third opinion is not uncommon. I’m surprised that your current oncologist didn’t look at the report. You may wish to read this article:
Mayo Clinic researchers demonstrate value of second opinions https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

Doctors consulted for a second or third opinion have the advantage of a more complete history and medical findings. Additionally, I’d also like to mention that the multidisciplinary approach at major centers, like Mayo Clinic, lets you benefit from the knowledge and experience of each specialist on your care team. Team members collaborate closely in diagnosing and planning each individual’s care. I recommend calling them to discuss the diagnosis and the discrepancy so that you can learn how they come to that conclusion.

What is the next step with Mayo Clinic? Can you ask for a telephone consultation?

We have appointment with a new oncologist Friday. After her visit last week and the way she was treated there is no way to continue with them. I do wish we lived closer to Mayo. If she would have had the last surgery at mayo they wanted to keep her there for 6 months for treatment. With small children it was impossible for her and we had the impression her local doctor was going to work with Mayo but that isn’t happening. A phone call discussion with mayo would be great. When someone’s life is at stake I don’t understand how you could not feel several opinions are better than one. If this doctors child was fighting for their life he would do anything and everything to save them. Apparently he has never experienced anything like what we are going through or he just doesn’t care. Hopefully our next experience and doctor will be better. If not we will keep trying. Whatever it takes! Thanks for the information everyone.

@lmp1

We have appointment with a new oncologist Friday. After her visit last week and the way she was treated there is no way to continue with them. I do wish we lived closer to Mayo. If she would have had the last surgery at mayo they wanted to keep her there for 6 months for treatment. With small children it was impossible for her and we had the impression her local doctor was going to work with Mayo but that isn’t happening. A phone call discussion with mayo would be great. When someone’s life is at stake I don’t understand how you could not feel several opinions are better than one. If this doctors child was fighting for their life he would do anything and everything to save them. Apparently he has never experienced anything like what we are going through or he just doesn’t care. Hopefully our next experience and doctor will be better. If not we will keep trying. Whatever it takes! Thanks for the information everyone.

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I admire your persistence, Imp. And it is what we have to do for our loved ones. Mayo experts will work with local doctors. I encourage you to call Mayo Clinic and find out what you need to know before your appointment with the new oncologist on Friday. Keep asking questions.

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